updated 2/10/2004 4:18:42 PM ET 2004-02-10T21:18:42

Medical ethicists are warning that guidelines are needed to cover instances in which family members want to take organs for transplant from living but comatose relatives who never gave consent.

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“The specter of keeping patients alive to harvest their organs over time seems horrific,” two ethicists from the National Institutes of Health said in Wednesday’s Journal of the American Medical Association.

The article accompanies a report from doctors in Los Angeles about a young firefighter who recently suffered sudden, severe bleeding in his brain and lapsed into a coma from which he was not expected to recover.

His family won permission to donate a kidney before doctors pulled the plug, even though he had never signed an organ donor card or expressed his wishes about organ donation. The kidney was given to an ailing cousin.

NIH ethicists David Wendler and Dr. Ezekiel Emanuel said that allowing family members to decide whether to take organs from a living but incapacitated relative should be discouraged and should be permitted only for patients who are in a persistent vegetative state. And they said that immediate family members should not get the organs.

The practice risks undermining public trust in the organ donation process, Wendler said.

“If people start thinking they can take your organs if you’re not feeling very good and your spouse thinks it’s OK, that’s going to cause more problems than it solves,” he said.

More discussion scheduled
Because of the JAMA reports, the issue will be on the agenda for a March meeting of ethicists from the United Network for Organ Sharing, which runs the nation’s organ donation system.

“I don’t know of any professional organization that has addressed this,” said Dr. Mark Fox, head the ethics committee at UNOS. “It’s certainly a topic that warrants discussion.”

The UCLA case involved a 20-year-old firefighter. Three weeks after he fell ill, the man was not technically brain dead but neurologists determined he had no chance of recovering and would probably die if removed from life support, though not immediately.

His parents believed he would have consented to organ donation because he had “dedicated his life to helping others,” according to a report on the case by Dr. Neil Wenger, chairman of UCLA’s ethics committee, and colleagues.

Organ donation guidelines say living donors must be competent to give consent.

Because the firefighter’s organs would have deteriorated if he had been taken off life support and allowed to die first, family members asked doctors to let them speak for the patient and give consent for a living donor transplant.

The doctors gave their OK. Though they believed the firefighter could not feel pain, they treated him during and after surgery as they would any other living donor, and he began healing quickly from the operation.

Four days afterward, doctors removed the man from a ventilator, and he died a day later. The cousin is now healthy, Wenger said.

Though such circumstances are rare, the UCLA ethics group agreed that guidelines are needed, and should require that in cases where a patient has not given consent, the family members designated to speak for him “should derive no benefit from the organ donation.”

Also, operations that probably would severely endanger the patient’s health, including removing vital organs, should be prohibited, they said.

Allowing these operations would do little to address the nation’s shortage of donor organs, yielding at most 1,500 organs per year, Wendler and Emanuel said.

“These benefits barely begin to address the needs of the 80,000 individuals on waiting lists for solid organs,” they said.

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